Why I Plan on Never Accepting the "Reality" Of RA
My perfect day would look like this: Have breakfast at my favorite restaurant and then head to the mountains. Take a long hike, or bike ride with my husband, and then come home and relax, feeling spent and refreshed from the natural beauty and physical accomplishment of the day. Maybe watch a good movie snuggling under the covers and then head to bed where I fall asleep quickly.
As my juvenile rheumatoid arthritis progresses, these perfect days become fewer and farther between: I haven't been on a bike, or on a hike in almost a year because I had neck fusion surgery in April. I've been watching my muscles shrink, and hoping that when my neck heals my JRA activity is quiet enough that my body will consent to all the plans I have.
If I sit and think about this I find myself longing for what I can't have, and feeling frustrated that another year of my life is being spent waiting to get back to the life I hope I can still have. If I don't stop myself my thoughts will go on to the life I'll never live, a life where I can surf, ski, mountain bike, rock climb, and backpack. I know that if I didn't live with JRA I'd be an outdoors adventurer, maybe even a professional athlete.
Taking advantage of the good days
But I rarely go down this path because it never leads anywhere good. Instead, I take advantage of days that my body feels good enough to get outside. Even on good days I take pain with me, which makes my outings less carefree, but I decided long ago that pain would only stop me so much. I pay attention to the pain and when it is up to a certain level I know I will drop things more, I won't be as strong, and my balance won't be as good. This is information that can keep me safe because it helps me to plan just how far I can push myself.
Often, I read Outside Magazine and plan trips in my head that I will do just as soon as my JRA becomes stable enough. Bike ride around New Zealand, scuba dive in Indonesia, hut-to-hut hiking in Colorado; I have all of these ideas swirling around in my mind.
Some may argue that I haven't accepted my reality fully, and I would probably have to agree. But that is exactly why I have ridden my bike for 100 miles in one day, 150 miles in two days during an MS ride, traveled to Wakatobi to dive with miniature sea horses, and studied tamarin monkeys in the jungle for two weeks. I may be disabled but I'm still alive. And while I am I want to experience everything that my body allows. Even if it goes against the stereotype of a person with JRA, I'm me and for some reason I was born with an athletic, adventurous mindset and a painful body with swollen joints. I have to work with that dichotomy as best as I can.
I often think that athletes and people with RA have a lot in common. In my first book I wrote: " Put a bunch of people with arthritis in a room with professional athletes and they'd have a lot to talk about: how to push through and go beyond a pain threshold that would stop most people in their tracks, how to ignore discomfort, how the snap, crackle and popping joints between them could create a chorus, how to pick yourself up after a fall, what it's like to be alone out there. Professional athletes will brush off injuries because those injuries jeopardize their ability to participate in the next game. People with arthritis will brush off their pain because it jeopardizes their ability to participate, period."
My resolve to seek inspiration
It isn't a comparison I've heard before but over the years, I've gotten a lot of inspiration from athletes because they really are the only ones beside us that regularly fight through intense discomfort in order to reach a goal. Our goals may differ quite a bit, but our resolve is the same. Speaking of resolve, lately my resolve has shifted a bit out of necessity. Because I'm looking at an extended period of time where I will be less than physically capable, I've resolved to find new things that I love. Once again, my inspiration comes from an athlete; this time Laird Hamilton, an American big wave surfer who co-invented tow-in surfing.
“ Going forward I only see evolving- learning more and becoming more efficient and focused. As you get older, you can take your destiny into your hands and define for yourself what success means. I love the concept of doing what I haven't done instead of doing something again just to prove I can still do it.....The people I admire stay full speed ahead into the unknown and are relentless in their pursuit of life. You just don't stop.” - Laird Hamilton as told to Michael Roberts in Outside magazine page 131 October 2017
Laird is talking about getting older, but he could be talking about living well with rheumatoid arthritis. The best way I know how to live well with this disease is to keep moving forward, to always believe that there will be options when my body is struggling, to keep planning new activities, new things to look forward to, and to enjoy the moment, even if it is a painful one. Redefining success is a big part of this; will I still be a success if I make it to Machu Pichu but am unable to do the long hike I had planned? For me the answer is yes, as long as I don't spend the time frustrated and angry but instead using it to discover something about Peru that enchants me. Am I still a success if I can't work in my chosen field? I'd say yes, since I was able to work for 15 years and now am able to transfer the skills I learned to new ways of helping people. What if I can't do any of the trips I had planned? Well, it sure feels good to think about doing them, so the success there is the time I spent imagining a good outcome versus the disability and dysfunction that could occupy my thoughts. Do I need to ride 100 miles ever again to prove to myself how strong I am? Right now I'd be happy with 10, and that keeps me inspired to walk my dog every day to keep my muscles as strong as possible.
My athlete/arthritis body will try its hardest to do whatever I ask of it, this I know. Going forward I plan on continuing to dream big, and see what happens.
After the past 2+ years, how do you feel about telehealth appointments to manage your RA?